NIDD Annual Report 2008

by Fionnola Kelly, Research Officer (NIDD), Health Research Board

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The National Intellectual Disability Database (NIDD) was established in 1995 to ensure that information is available to enable the Department of Health and Children, the Health Service Executive (HSE) and the non-statutory agencies in Ireland to provide appropriate services designed to meet the changing needs of people with intellectual disability and their families. The Database is intended to provide a comprehensive and accurate information base for decision making in relation to the planning, funding and management of services for people with an intellectual disability. The 2008 Annual Report of the National Intellectual Disability Database Committee includes information pertaining to over 26,000 people with an intellectual disability.

Demographic profile

There were 26,023 people registered on the NIDD in December 2008, representing a prevalence rate of 6.14 per 1000 population. There were more males than females at all levels of intellectual disability reported in 2008, with an overall ratio of 1.30 to 1. The report shows that the total number with moderate, severe or profound intellectual disability has increased by 36% since the first Census of Mental Handicap in the Republic of Ireland was carried out in 1974. One of the factors contributing to this increase in numbers is the growth in the general population over the period. The proportion of people with moderate, severe or profound intellectual disability who are aged 35 years and over increased from 29% in 1974 to 38% in 1996, and to 48% in 2008 (Figure 1). This reflects an increase in the lifespan of people with intellectual disability. This changing age profile observed in the data over the past three decades has major implications for service planning, including an ongoing high level of demand for full-time residential services, support services for ageing caregivers, and services designed specifically to meet the needs of older people with intellectual disability. This helps to explain the ongoing demand for additional resources for this sector.

Service provision in 2008

The numbers registered on the NIDD in December 2008 were as follows:

  • 25,433 people with intellectual disability who were in receipt of services, representing 98% of the total population registered on the NIDD. This was the highest number of people in receipt of services since the Database was established in 1995.
  • 289 people (1% of those registered) who were without services in 2008 and who were identified as requiring appropriate services in the period 2009–2013.
  • 301 people (1%) who were not availing of services and had no identified requirement for services during the planning period 2009–2013.

Of the 25,433 people who were in receipt of services in 2008:

  • 8290 (32.6%) were in receipt of full-time residential services, an increase of 28 since 2007 and the highest figure recorded on the NIDD since 2001. This is the fifth consecutive year in which the data indicate that more people live in community group homes than in residential centres.
  • The number of people with intellectual disability accommodated in psychiatric hospitals decreased by 21 (6.4%), from 329 in 2007 to 308 in 2008, representing an ongoing trend towards their placement in more appropriate settings.
  • 25,319 (99.6%) people availed of at least one day programme in 2008. This was the highest number of day services availed of since NIDD data were first reported in 1996. Of this group, 8199 were in full-time residential placements and 5310 were in receipt of residential support services such as respite care.
  • 20,971 (82.5%) people availed of one or more multidisciplinary support service. The services most commonly availed of by adults were social work, medical services and psychiatry. The services most commonly availed of by children were speech and language therapy, social work and occupational therapy.

Sixty-four per cent of those registered on the NIDD (16,708 individuals) lived at home with parents, siblings, relatives or foster parents in 2008. More than one in four people who had a moderate, severe or profound intellectual disability and who were aged 35 years or over in 2008 lived in a home setting. Because people with intellectual disability are living longer, the likelihood of their outliving their caregivers has increased substantially in recent years.

Since the first report from the NIDD in 1996, there has been significant growth in the number of residential supports available. In particular, the report shows a significant increase of 428% (3728) in the number of individuals who availed of centre-based respite services, either as a planned or emergency intervention, bringing the total number of respite services availed of in 2008 to 4599. The need for respite services is likely to continue as the carers of adults with intellectual disability begin to age beyond their care-giving capacity.

There has also been significant growth in the level of provision of full-time residential services and day services, mainly due to the multi-annual funding provided as part of the National Disability Strategy.

Service requirements

With regard to future need, the 2008 data indicate that 4627 new residential, day and/or residential support places will be needed to meet service requirements. The following services will be needed in the period 2009–2013:

  • 2256 full-time residential placements, an increase of 75, or 3%, since 2007 and the highest number since the Database was established. The number of new full-time residential places required has been increasing consistently following a slight downward trend during the years 2000 to 2002. The demographic profile of people with intellectual disability in Ireland suggests that the number of new full-time residential places required is likely to continue to increase over the coming years as those with a more severe disability and those who care for them advance in age.
  • 2129 residential support services, an increase of 41, or 2%, since 2007. This high level of need is presenting even though there were over 5000 people availing of residential support services in 2008.
  • 242 day programmes. The number of new day places required (this figure excludes multidisciplinary support services and services provided by early intervention teams) has been decreasing since NIDD data were first reported in 1996 and is now at its lowest since the Database was established.
  • A group of 188 individuals who were living in psychiatric hospitals in 2008 have been identified as needing to transfer from these locations to more appropriate accommodation.

Of those in receipt of services in 2008, 11,823 people required alternative, additional, or enhanced services in the period 2009 to 2013. This group included people who required an increased level of service provision, increased support within their existing services, transfer to more appropriate placements, or a service change to coincide with transition periods in their lives, for example, movement from child to adult services, or from education to training and/or employment placements. To address the required service changes over the next five years, 10, 248 day places will require changes or enhancements, of which:

  • Health-funded services are required by 7102 individuals (69.3%).
  • Employment services are required by 1311 individuals (12.8%).
  • Educational services are required by 1161 individuals (11.3%). A large proportion of the 1530 individuals who were attending special schools in 2008, require adult day services in the period 2009 to 2013. Of this group, almost one quarter (368 individuals) require rehabilitative training, 335 (21.9%) require vocational training and 179 (11.7%) require activation programmes. This demand is likely to put pressure on existing resources over the next few years.
  • Generic services are required by 674 individuals (6.6%).

The report also indicates that 3094 individuals in full-time residential services in 2008 will require an upgrading or change of accommodation within the next five years, while 1564 individuals receiving residential support services will require an additional residential support service or will require their existing support service to be upgraded during the period 2009–2013. Despite high levels of service provision in 2008, the report shows that there is still a significant demand for new and enhanced multidisciplinary support services. Three-quarters (19,512 individuals) of the population registered on the NIDD require a new or enhanced multidisciplinary support service in the period 2009 to 2013. There was substantial demand for all the therapeutic inputs, in particular, psychology, speech and language therapy and occupational therapy (Figure 2).

The 2008 dataset, in line with data in recent years, indicated that, despite substantial levels of service provision in day, residential, residential support and multidisciplinary support services, there was an ongoing demand for new intellectual disability services and a need to enhance existing services. The numbers of new full-time residential and residential-support places required were at their highest since the Database was established in 1995. While the data in recent years highlight the corresponding growth in services, demographic factors and historical under-funding of intellectual disability services are likely to be contributing factors to long waiting lists for these services. The increased birth rate in the 1960s and 1970s has resulted in a large adult population moving through the services at present, contributing to an ongoing demand for services. In addition, people with intellectual disability are living longer than previously and require a range of age-appropriate services as well as supports for ageing carers. The service demands identified in the report outstrip the level of resources that have been put in place under the multi-annual funding package 2006–2009. In the medium term, it is expected that the increased demand for intellectual disability services will continue.

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